11 Things Only Someone With Endometriosis Understands

11 Things Only Someone With Endometriosis Understands

SEPTEMBER 22, 2015 | By SARAH KLEIN

When Michelle Johnson was diagnosed with endometriosis, she thought she had the flu.
 
"Winters here in Chicago are brutal," she says. "So when I found myself very fatigued and lethargic with a bad fever, I thought it was just the weather."
 
She ended up in the ER after the fever hit 104°. After 9 hours of tests for life-threatening concerns like a ruptured appendix, she found out she actually had stage 4 endometriosis. Endometrial growths had gotten so large they were pressing on her kidneys, restricting the flow of urine, which had led to a kidney infection that caused the sky-high fever. She'd been having increasingly heavy and frequent periods, but she thought it was "part of being a woman," she says. It wasn't: "The doctors guessed I had had endometriosis for at least 10 years, unchecked, undiagnosed." She was 33. 

A little endometriosis 101 for the unfamiliar: Cells that typically grow in the lining of the uterus, called the endometrium, can end up in other places, where they really don't belong, says Marc R. Laufer, MD, a Harvard professor, chief of gynecology at Boston Children's Hospital, and the director of the Boston Center for Endometriosis. "Those cells implant in those other locations and cause pain if left untreated or undiagnosed."

That's because they grow—and bleed—as if they were still at home in the uterus. "Every time a woman has a period, there are these micro-periods happening," says Tamer Seckin, MD, a specialist in endometriosis in private practice in New York and the co-founder and medical director of the Endometriosis Foundation of America. The immune system is altered in some way in women with endometriosis so that no matter how much swelling and inflammation the body sends to the pelvic cavity to try to clean away the blood that doesn't belong, the implanted cells are still able to thrive, acting almost like cancer in many ways. Growths on the ovaries, called endometriomas or chocolate cysts, can permanently damage a woman's fertility. Cysts may grow on the bowels, bladder, or, more rarely, even infiltrate the lungs.

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An Interview with Dr. Tamer Seckin, Endo Expert
An Interview with Dr. Tamer Seckin, Endo Expert

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Patient Reviews

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  • Megan Rafael Moreno

    I was in pain for 2 years. I was getting no answers, and because dr Goldstein and dr seckins were willing to see and treat me I'm finally feeling almost back to normal. They were very down to earth and helpful in my time of need. Dr Goldstein was easy to talk to and caring, she took care of me…

  • Nancy Costa

    Dr. Seckin is one of the best endometriosis surgeon. Every time I go to the office, he really listens to me and is always concerned about my issues. Dr Seckin's office staff are a delight and they always work with me. I feel I can leave everything to them and they will take care of it. Thank you to the…

  • Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…

  • Nicholette Sadé

    Dr. Seckin brought me back to life! I am now 3 weeks into my recovery after my laparoscopy surgery, and I feel like a new and improved woman! Being diagnosed with Endometriosis, then 25yrs old in 2015, and discovering the severity of my case being stage 4, made me devastated. Dr. Seckin's vast knowledge of the disease, sincere empathy, and…

  • Jason Curry

    My wife had her laparoscopic excision surgery to remove endometriosis with Dr. Seckin on Jan 30, 2014. She doesn't write online reviews so I'm writing this on her behalf. I accompanied her with each office visit she had. The staff--Lucy and Kim, are very friendly, warm and professional. Dr. Seckin was excellent in every capacity. He spent a lot of…

  • Liz Filippelli

    He is an awesome doctor who saved my daughters life from debilitating endometriosis..she knew instantly upon awaking from surgery that she was better..that wad May and no complaints only praises for Dr. Wonderful Seckin!!

  • Karen N

    I was diagnosed with Endometriosis at 19. I saw several Endometriosis "Specialists" since then, had a few laproscopic surgeries to "remove" the endometriosis and continued to be in pain. I had a hysterectomy in 2012 and was told this would stop the pain once and for all. No such luck! Tired of spending days in bed with a heating pad,…

  • Lauren Rodriguez

    I researched and found Dr. Seckin after dealing with years of doctors who couldn't help me or refused to go the extra mile for their patients. I have to say I am truly blessed to have found such a compassionate and talented doctor. He is exquisite with everything he does, and both his team at the office and surgical team…

  • Kellya Vespa

    Dr. Seckin is a very skilled surgeon. There are not many doctors like him that truly understand the effects of endometriosis. I am lucky to have found him. The staff is wonderful too.

  • Meg Connolly

    Dr. Seckin truly LOVES what he does and cares about his patients from the bottom of his heart. My life has already changed in 3 weeks and I couldn’t be more grateful. Should I ever need another operation for endometriosis, Dr. Seckin will be the one to do it. I recommend him to anyone I come across with similar problems…

  • Elisandra O

    Dr. Seckin is an amazing Doctor he is very compassionate, caring and he will be honest with you. He's been my doctor for 19yrs and I am so grateful to have someone taking care of me that knows what he is doing and knows the best way to treat each and every situation. I would definitely recommend him and his…